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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Great Doctor Experience
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5 posts in this topic

Just wanted to share a great doctor experience from yesterday, 'cause we all need hope, eh?

I had my yearly physical yesterday with my GP, who is just a regular doctor, not alternative medicine or specialist or anything. But I haven't been to see him since I figured out that I react to lower gluten levels than the average celiac. I keep thinking I have, and then remember that I saw him when I was reacting, and when we thought I was reacting to all grains, but that was all. So I was a bit nervous how the appointment was going to go, as you can imagine.

He has not been the most informed doctor about everything, but he has always, so far, been one who is willing to learn and who doesn't discount the patient experience. Yesterday, he kept right on with that trend, and it was wonderful.

Since he last saw me, my weight is up, I look much healthier and feel better, and after commenting to him on how I'm doing and what me and the other two doctors think we've figured out, he looked at me a moment and then said that reacting to gluten at super low levels made sense to him with all my symptoms and the reactions I tend to have. Because before this, how I was reacting was so crazy he couldn't think of anything that it could be.

But the best part came when we were discussing concerns about the ER. I have worried what to do about being treated in the ER, because at this point, anything with a grain derivative at all sets off my symptoms, and as they're neurological, I start getting muzzy headed and I'm no longer fit to make good decisions about my health. Obviously not a good thing in an emergency. And any meds that are 'gluten free' are still often bad for me because of cc from other grains, best we can tell. Any grains in anything, to date, make me progressively sicker the longer I take them.

I mention my worried to him and he's just nodding and says pretty bluntly: yeah, if you go to the ER and tell them your issues, they're going to write you off as a kook, most likely. He recommends that I make sure to wear my medical bracelet at all times, and then put in a bit to see wallet card and put in my doc's number.

He now has in my file a big list of what not to do, and what TO do, for me in an emergency. And we talked about how 'gluten free' or 'corn free' will still often have too much grain for me, so he has 'no ingredients derived from grains' as a bad thing for my meds. And on top of that, he asks me to send him a list of common medications that I know of that I can't have, and he'll put them in the file as 'do not use' in an emergency section at the top of the form.

It was, honestly, a great appointment. I left there feeling listened to, and it was really, really wonderful to know that not only is he supportive in a crazy situation, but he is trying to help me stay safe, too.

We were just laughing by the end, talking 'bout how of all of his patients, if anyone was going to show up with alien babies or something, it'd be me, and he wouldn't even bat an eye at this point. :lol:

Just wanted to share, partly because I complain a lot about bad doctors and bad experiences, and it's honestly wonderful when a thoughtful, caring, thinking doctor runs into an unusual situation, and works with his patients to figure it out as best they both can, even on limited information. I'm so happy I have this guy!

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Wow, that's great! Of course, I don't know how they'll give you meds. I guess IVs.

I've recently gone grain-free, because I'm apparently super sensitive, too. My health has improved a lot since then. I'm not sure what to do about that same issue. I guess if I have to have a prescription I can get them from a compounding pharmacy, but in an emergency, it is tough!

Are you planning to wear a bracelet all the time?

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That's great. I should probably do that too. I just hope to avoid the emergency room at this point. Is there much that they might give you while you are unconscious which would make you sick?

Our doctors are with us too. In fact, it was my GI who first suggested super sensitivity to me. All I got before was denial of its existence. In fact, he thinks that all or most of those with refractory sprue are actually super sensitive.

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Thanks for sharing this! Do you carry antihistamine for emergency, and/or use one regularly? If so, which one(s)? Do you carry an epi? Have you had to use an epi yet? I would love to hear more specifics about your Emergency Action Plan, if you can share the details. We continue to struggle to find antihistamines for our Emergency plan. Also, are you doing any nasal sprays? We continue to get recommendations for nasal sprays to help with our airborne gluten exposure issues.

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Wow, that's great! Of course, I don't know how they'll give you meds. I guess IVs....

Are you planning to wear a bracelet all the time?

I'm thinking the IV's are most likely, yeah. Although I imagine in an emergency where I can't speak for myself, an IV is most likely anyway, ya know?

So far, I've been wearing a bracelet now for about a year and a half. I tried to have one I'd take on and off, but I just forget to put it back on, so now it's on 24/7. Got a tan line at this point, LOL. Originally, I had it because I'd come across something and not be able to breathe (we thought it was allergies but turns out to be something involving irritants and spasms of my vocal cords), and I also have an allergic reaction to most commonly used antibiotics. I'll have to get a new bracelet with some new language now,though.

Is there much that they might give you while you are unconscious which would make you sick?

For non-gluten issues, antibiotic allergies are a worry. I'm reacting more strongly to my allergies since I went gluten free. For gluten, I'm more...nervous, I would say. :( I was talking to my GI doc - who I really do love as a doctor - and asking him about the potential of injected gluten. It was an...interesting discussion.

He's very open to the idea that very, very small traces of gluten in the food supply can harm a celiac, and that it's so easy to have problems with it in all sorts of food, even when they are first seem safe. But when medication comes up, he doesn't want to believe that medicine is the same way. All the medication I have been sick on with a gluten reaction has been prescribed by other doctors, so he never really saw that.

In the end, he said that theoretically, if gluten somehow got into our bloodstream, he thought it could possibly be a problem, especially if one was a celiac with neurological problems. But at the same time, he didn't see how that would be possible to have it happen.

However, when I go to websites to check out information on corn allergies, the ones who are most sensitive will react to certain injected medications that have corn-derived ingredients. Even when these are considered to be 'free from corn.' So whatever processing is done, there is enough protein left for an allergic person to react to in injected meds.

I don't know where that leaves me. I'm still drying my home-grown corn to test on myself. Want to make absolutely sure that it's gluten cc in corn vs. grains themselves that are giving me this stupid neurological reaction. If it's corn, I'm avoiding the corn meds. If it's gluten cc of corn...could some meds be okay, or am I so sensitive I'll react even to the potential protein remaining in injected medication? :unsure:

If I avoid the corn derivatives in meds from the ER, dextrose is the most difficult one to avoid. It's a commonly given IV fluid. There's a corn free site with a corn allergy wallet card that lists the most common corn ingredients to avoid, many of them potentially in medication, and I'm thinking I may just copy that one down.

( http://www.livecornfree.com/ )

So far, I've reacted to all iodized salt I've tried (which uses corn-derived dextrose to stabilize the iodine), corn distilled vinegar, corn distilled ethanol in inhalers, and xanthan gum, all of which are corn derived but supposed to be corn and gluten free. Maybe it was something else in the products, but...sigh. Makes it hard to decide exactly what to do in this kind of situation, you know? Don't want to avoid something if it's needed to keep me from dying, but don't want to have something ongoing, if I can't say no, that could make dying more likely because it's making me more vulnerable to infection, etc....

Do you carry antihistamine for emergency, and/or use one regularly? If so, which one(s)? Do you carry an epi? Have you had to use an epi yet? Also, are you doing any nasal sprays?

Right now, I have an epi pen, but haven't had to use it yet. Luckily, my severe allergic reactions where benadryl wasn't enough all occurred in the ER, anyway. They all happened before I went gluten free, though, so I don't know how I would react to it now.

I don't have any antihistamines or nasal sprays right now, no. I reacted to the couple I tried, but my vocal cord crap makes my throat react to most stuff that goes down my throat at this point, so even if medicine helps my lungs during a reaction, my throat starts to close up because of the irritation. I've no idea at all what to do except for the epi-pen, in allergy cases.

....and this is the reason I'm thinking of learning herbalism, LOL. Man, sometimes you just gotta laugh or cry.

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